Wednesday, May 12, 2010

So, What Do You Say About Your Life?

A lot of times, I read and hear directly from families affected by autism that people just don't understand. I've uttered this myself, even to people close to me in my life. It's the truth. So my questions for discussion are:

How do you explain what it's like being an a parent/family member/guardian of an autistic child?

How do you help people understand? What kinds of illustrations do you give, analogies do you form, comparisons do you come up with?

Do you ever run through a typical day with someone who is learning about your life, whether they are close to you or not? What is the reaction? What is the response from them?

My take? I explain that with an autistic child there are issues every day. Every day. Some days may be very mild and not a big deal. Others may exhaust. And some others may crush your soul. There's lots of emotions, good and bad, and there's lots of things you must remember and think about. It's not organized or predictable, necessarily. I could (and sometimes do) go further than this with specifics.

I also share the positive stuff. I mean, I have two great kids! One is just more fragile and is more work.

Your take, please?


  1. Nobody ever understands - even somebody with an autistic child has different things going on daily. I find that most people dismiss it and think the daily struggles of autism are overexaggerated...

  2. Suzi, I agree and you make a good point. Although all of us are connected in this community with have the condition as the catalyst, autism is like snowflakes, so different.

    Some days I wish I could have a hidden camera in my house and actually show people my experience.

    But then I suppose, to your last point, people could still dismiss it anyway.

    And old and dear friend has been wracking her brains trying to figure out a way to help me personally as a friend, a fellow parent, and woman. She told me that I say, "You just don't understand" regularly. While that's true, I don't know how to say or do much more to explain.

  3. Huh...tough question.
    For years when he was younger, I did use a visual with my hands. It referred to how things that other kids naturally tend to just "figure out", I have to (use my hands weaving a pattern like a roller coaster) go around a completely different way, and kind of in the back door.
    I have explained lots of times how we've got to prepare him ahead of time for everything that will go wrong or change throughout the day---which of course is impossible.
    Before he was diagnosed, I would explain to my best friend our dilemmas. She didn't "see" any difference in him. Then we went away for a week and left the kids with her. When I got back, she said she now understood all my comments and frustrations. THAT was very validating. Maybe we should just have people watch our kids more often, especially those who don't get it.
    Luckily (?) I have always had my mom-in-law, who's oldest is high-functioning.

  4. I often don't try to explain because it just seems like it just doesn't sink in, even when people have had exposure to my boys (I've got 2 high functioning PDD boys, and 2 NT kids as well, all born within 4.5 years of each other - whew!). They don't seem to translate the hour of craziness they just experienced during kids church into 24/7. It's like they think it's "easier" for me to deal with because I'm used to it. Yeah, maybe I know what to do and what to watch for, and maybe my house is "autism proof" now because it HAS to be for me to have any sanity left whatsoever, but that doesn't make it a breeze.

    The comment I hate the most from other moms (of NT kids) is how "It's just that raising children is difficult." The total dismissal that perhaps my experience is a little more challenging than what they are facing. Have their children made it impossible to take a vacation? To go to the store without at least one other adult in tow? To visit friends at some place other than YOUR HOUSE when you've got your kids with you?

    The thing that gets me the most about them not "getting it", is that they don't get how isolating having autistic kids (one's an eloper) is. It gets awfully lonely at times. And I don't even have any family support in the area, so it's not like at least I have some people who understand!

  5. This discussion is just great. You know I find that when I place my child in the care of his grandparents (my parents or in-laws), he does really well. Of course, the grandmas have been exposed to when the autism gets dark and twisty (he was in my care, not theirs, but they were eyewitnesses). Tami, it's nice that you have a fellow warrior in your family that gets it.

    Mina, you know, I really feel for the folks that don't have family support where they live. I do, and I still, even though my entire external family (including in-laws) all live basically in Puget Sound area of WA state, can feel isolated. I cannot imagine if I were elsewhere honestly.

    To your second paragraph, I had to cancel some weekend getaways with just my husband and I because our boy was struggling too much. That really, really hurts the heart.

  6. Kim,

    Is it horrible to say that I have major envy of those families, with or without autistic kids, who have family support? I HATE it being just DH and myself sometimes. We've had TWO nights away from the kids total since my oldest (NT boy) was born 7.5 years ago. I've actually had a total of 4 nights because the last two years I begged and pleaded and got to go away on a women's overnight retreat.

    The worse thing, for me though, is that DH's parents actually live about 45 minutes away - but they aren't "kid" people. (I feel sorry to DH growing up.) Which means they REALLY aren't autistic kid people - I think they are actually kind of afraid of the boys (one who's just turned 6 yesterday and one who's almost 5) because they can be unpredictable and hard to control.

    It's sad when families don't even try to understand what we're going through...

  7. Wow, I always tell people it's a spectrum, and some are on the Rainman end of the spectrum. Then I tell them we're so far from that end, we can't even wave at Dustin Hoffman. It gets a chuckle, but it also makes a point. Don't judge.

    Mainly, I try to bear in mind that those who don't live with D couldn't possibly get it. They don't see the hardest parts. Surprisingly, the meltdowns are hard, but when he cries, it's harder. Each time someone gets to see the ugly side of autism, I make one point a priority. My son isn't as severe as it gets. It can be much worse. That blows minds every time. We've brought a few people to advocacy using that line.

  8. Hi Jolie! Just got back from a weekend respite, feeling fresh and relaxed (for now, hee, hee).

    Loved your comment. Particularly the last part. I am going to lift that from you if you don't mind!


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